Caregivers provide extraordinary assistance to people dying from cancer
Deakin University PhD student Eva Yuen recently took part in the final of the Three Minute Thesis competition at the Geelong Waterfront Campus. This is an edited version of her presentation.
Imagine reading this job description:
- We’re looking for an enthusiastic, energetic person to care for people living with cancer
- We’re particularly looking for people over 65
- You will be the primary source of social and emotional support for these people
- There is evidence to support the fact that you will be important to their clinical outcomes
- Cooking, cleaning
- Dressing, bathing
- Assisting in decision making
- Managing & monitoring patient symptoms
There’s no training available
- Limited information about your role
- No specific patient information
- This job is, essentially, an unpaid, unsupported position
Would you consider taking on this role? Probably not.
But over 400,000 people in Australia are treated for cancer every year.
In 2010 over 43,000 people were expected die from cancer.
And it’s the caregivers who are the ones providing extraordinary support to these people living and dying with cancer in and outside the hospital setting.
Anyone at any time may find themselves responsible for the wellbeing of another.
To do the job well, it’s crucial for caregivers to access a range of information.
Caregivers don’t just need information about the disease, treatment and survivorship phases, they need to assimilate that information to help them make complex decisions about the patients health and treatment options and they also need information to manage their own health and wellbeing.
The problem is –
Many caregivers have great difficulty finding the information they need, knowing what the information means, or knowing who or what to ask for. Other caregivers understand the information but struggle to apply it in a helpful manner. For many, it’s a jungle out there!
Now – I'd like to introduce you to the term health literacy.
Health literacy is a person's capacity to find, understand and use information to promote and maintain good health. It has just emerged as a state, national and international health priority area.
Currently no-one has measured health literacy within the caregiver population.
My study is the first in the world which seeks to develop an instrument to measure the health literacy for caregivers of people with cancer.
My research question asks:
What key issues represent the health literacy for caregivers of people with cancer?
Given that caregivers provide important information to patients, and play active roles in the decision making, as well as home care management of people with cancer it’s critical to understand and assess the health literacy of caregivers to begin to understand the impact that caregiver health literacy has on patient health outcomes.
The development of my instrument for caregiver health literacy will be based on the real world experience of patients, carers and clinicians. Focus groups that I’ve run with health professionals and caregivers are already highlighting major gaps and challenges in caregiver health literacy.
Insights from my thesis will directly inform the development of interventions, health policy, and ultimately, the lives of many thousands of caregivers and people with cancer in Australia and beyond.